Psor Sisters

As summer continues, the girls are doing wonderful!  Right now we are enjoying a few small trips before heading back to school at the end of the month.  These little trips are a real danger for us.  No, not because kids can be accident prone (which is a whole other issue) but because the sun and sand poses such a threat to our clear skin.

We are always trying to stay safe in the sun, but we realize it’s not always possible.  SPF 50 sunscreen, Rash Guards, Hats … by the time we suit up for the beach, I am exhausted!  But with all this, there is inevitably some piece of skin I miss. 

Last year it was that strip across Carlys back as she leaned over playing in the sand.  The sunburn that resulted from that unprotected strip of skin turned to a strip of Psoriasis in a really uncomfortable spot.  The Koebner Effect; that strip lasted a year before finally fading.  

The Koebner Effect is when trauma to the skin causes lesions to develop.  Even with the girls doing so well, I cringe with each scrape or the slightest kiss of sun.  These inocent facts of life could suddenly change everything, just as Strep triggered it all just a few years ago. 

This year it’s the top of her ears that poked out from her hat…. and I wait to see what comes of that kiss of sun. 

Short of putting my kids in a bubble, I realize I can’t dwell on the past or control the future.  I can just be aware and love every inch of my beautiful girls!

 

Sometimes when you are behind, the best way to catch up is to start right where you are.  We started this website to share the girls story and help promote awareness for Psoariasis and Psoriatic arthritis but so much has changed since their diagnosis in 2007.

In time I will update their story but for now, I want to share where we are today.

Today I picked the girls up from Dragonfly Forest, a nonprofit camp for children with serious illness and chronic disorders.  Dragonfly is more than a camp, it is a feeling and a family.  As a mom, I get emotional thinking about the people and the experience of Dragonfly.  I am not sure I have the words to accurately explain the gift they are in our lives.

Katelyn started attending Dragonfly 5 years ago.  It was then that she returned from Dragonfly with the spot on her leg which we thought was a mosquito bite.  Seeing a picture of Katelyn from Dragonfly 2007 brought back the memory of that summer and the trying months that followed. That “mosquito bite” was the beginning of our journey with Psoriasis.

I am always asked how I deal with not one, but two children with Psoriasis.  As I have heard many parents of chronically ill children say, you don’t have a choice – you just do it.  Methotrexate and the many injectable medications used to treat Psoriasis are scary drugs with nasty side effects.

We were lucky and did not let it get us down. Whatever the girls were up for, we did.  When they were tired or sore, we slowed down but we never gave up.

Dragonfly is a lot like our journey with Psoriasis: I am pretty sure the words No or CAN’T are not in the Dragonfly vocabulary and that was our attitude when the girls received their injections. I am not discounting the terrible side effects and difficulty of these diseases, I’m just saying it is a state of mind and an attitude.  It’s how you deal with whatever life throws you.

I think this great video from Dragonfly says it all!
Dragonfly Forest

The girls were 7 and 5 when Psoriasis entered our lives.

I thought it was a small red bug bite on Katelyn’s leg when she returned from summer camp. Over the next few months she had more “Spots” and her sister began to develop them as well. We spent months searching for answers and nothing really made sense.

Why did they both have these spots? Was it contagious? Why didn’t I have any “spots”?

We tried creams, Allergists, Dermatologists and of course our pediatrician.

People stared, we cried and I struggled with so many different feelings. We had parents questioning our attendance at school and spent months on a strict gluten free diet.

By December it was obvious that Carly was now much worse than Katelyn. The lesions covered her entire body, her ears were covered inside and out and her scalp was covered by THICK lesions. The daily bumps and bruises of childhood led to pain and bleeding. Emotionally this was tough for everyone!

We found a great Dermatologist who diagnosed Strep and explained how Psoriasis is most commonly triggered by Strep(Stress and Injury are two other triggers).  I have to be honest, I thought Psoriasis was just dry skin.

Our Dr. did a biopsy on Carly’s spots and prescribed UV treatment three times a week for three months for both of my children. We also began trying tons of different topical medications.  Nothing was helping. Both girls were treated for strep on several occasions and in February we thought the UV Treatments were helping. Suddenly they were worse!

Strep again!

When everything else failed, we decided to take things to the next level. Our Dr. called some colleagues and we soon received a call from Children’s Hospital of Philadelphia (CHOP), who wanted to see both girls right away.

By the time our appointment arrived, Carly was showing signs of Psoratic Arthritis. Our appointment was on a Friday, it was rather intense and we left with several medication options.

These were not nice options. They are serious drugs with serious side effects. We were sent home with the information needed to make an informed decision. We spent the weekend researching the medications and decided to begin Methotrexate (MTX) Injections right away. Of course right away meant a few weeks .. however long it would take for the physicals and blood work to get a baseline for monitoring.

Our first injection for Carly was in the Pediatricians office. I didn’t think I would ever be able to do it alone. She was wiped out after that injection. Just not herself and she was tired.

Our next injection was at home and went rather well. I felt better having her home and away from the stress of knowing she was going to the Dr’s office for a shot.  I think that stress is what made her so tired.

Our next hurdle was when Carly started loosing her hair and Katelyn was becoming very self-conscious and withdrew.

We decided to start Katelyn on MTX for concern for her emotional health and a fear she would worsen.

Carly was soon fitted for a wig and before we knew it school was out for the summer.

4 months into our treatments

The girls are finally clear and we have seen few side effects.   and no complaints of sore joints.

Excerpt from My Diary

On Sunday we go to Ocean City for Three days, then Friday we head to Washington, DC.  We are going to tour the White House and participate in the Walk To Cure Psoriasis.

Last week we went back to CHOP. The girls will continue another 5 or more months on the Methotrexate but are clearing up well.  Carly’s hair is starting to grow back too! I can’t wait until it is nice and long for her!